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Getting inside the head of the incapacitated patient: A solution for the healthcare proxy by Monica Williams-Murphy, MD

Dr. Monica Williams-Murphy is a Board Certified Emergency Medicine Physician, who practices in one of the largest emergency departments in the United States at Huntsville Hospital. Through her writing and speaking, she is devoted to transforming the end of life into a time of peace, closure and healing. Media Page

Making medical decisions for someone else is hard

I see this problem all the time in the hospital setting. “Momma” is “altered” and cannot make a decision for herself. “Daughter”, who is the healthcare proxy, the power of attorney, has no clue what momma would want us to do, or not do next.

How do we help people who are stuck in this very difficult position of making uninformed decisions for another?

We are supposed to guide proxies to a position of substituted judgement but that is super-hard. Why? Because it is hard to get proxies to stand outside of themselves and their own emotions- guilt, fear, and love- to think objectively about what “momma” would want herself.

Compound this with the potential guilt burden which arises for these decision-makers and we have a recipe for disaster. I have known health proxies who have suffered for decades about the “rightness” or “wrongness” of the decision they made for some they loved.

I think I have a solution.

My friend, Dr. Damon Fierro, and I have created a (free!) tool for use in any setting requiring substituted judgement for another (especially useful when no clear advance directives apply to the decision at hand).

Here is how it works:

“You, as the surrogate medical decision-maker, do not have to decide what to do by yourself.”

Let (your loved one) decide for himself or herself, following these four steps:

1. Reflect:Think back and imagine (your loved one) when he or she was still able to make his or her own decisions.

2. Reconstruct preferences: Answer the following questions: What are his or her favorite things? What is his or her favorite color? What are his or her hobbies? What is his or her favorite meal? What things did he or she dislike?

3. Reconstruct values: Think about whom he or she was, his or her opinions, his or her beliefs. What were his or her values? How did he or she choose to live his or her life?

4. Review medical options and decide: Now, imagine that (your loved one) is standing here beside you, looking at himself or herself here in this hospital bed (or other setting). He or she hears the diagnosis and the available options the doctor has given. What does he or she want us to do, or not do next?”

This is the best tool I know of to “get inside the head” of the incapacitated patient- increasing the likelihood that the surrogate decision is consistent with the life and values of that person.

Dr. Fierro and I make this tool freely available for use and reproduction without permission. Click here to download, email, or copy the tool for your own use or for institutional use. Let us know if you think it helps!

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6 thoughts on “Getting inside the head of the incapacitated patient: A solution for the healthcare proxy by Monica Williams-Murphy, MD”

Not such an easy task to get inside someone else’s head. Under the best of circumstances, it’s hard to do! An incapacitated patient makes the job even harder. It’s great to have some how-to instruction! This tool looks like it will be really very useful for the decision-makers. I downloaded and will save!

The lead heading, Getting inside the head of the incapacitated patient: – was intriguing – but for me, a bit misleading. I find the term “incapacitated” the culprit.

Being mentally incapacitated – is one issue. And I am certain, and I do know from experience – making a decision for someone else, who does not have the mental capacity to make their own up to their own decisions day to day as to what they want to do – .is a tough place to be.
However, using the word “incapacitated” opens the door to OTHER definitions of that word. Incapacitated – as in physically unable to to make daily decisions. After all, if you are paralyzed and unable to move or do anything on your own…what you do each day is totally dependent on someone else ALLOWING you to accomplish a task.

IF a mentally clear person – but who is a totally PHYSICALLY dependent person – speaks up about what they want or don’t want…….. often they are not heard….they are overruled, often ignored and usually sent to a shrink.

The determination that a paralyzed person is depressed, and if they were not depressed they would never engage “such” thoughts begs the issue that even SOME handicapped people have opinions about life altering situations.

I, as a former paraplegic, who at times could not hear, see or talk…..had opinions. When expressed…the shrink was sent in to “unopinion” me.

I was as clear and focused then, as now – on the choices I wanted….and even though, in spite of and because of, my spontaneous remission that shocked all, I still hold dearly to the idea that even a physically challenged person – who wants to make certain decisions OUGHT to be given at least the same degree of latitude in choices as people making decisions for you when you cant do it for your self..

If I think it is time to pull the plug, stop all treatments, let me go, do nothing else, or even help me to end the misery quicker…a little extra morphine….allow me the same degree of choice.

Laurie, I was thinking that “incapacitated” meant something like the patient completely disoriented or in/nearing a coma — therefore really no ability to speak on his own behalf. No? That’s fairly common language in medical care. That would be the time when this tool could be extremely helpful to those others (the health care proxies) left to make eol decisions. — It looks to me like we might be mixing 2 separate concepts in your discussion: (1) the comatose patient, and (2) your personal experience of being so egregiously & erroneously disrespected.

If there are no AD’s, what a headache for everyone, incl. the responsible physicians! It seems to me that the tool stands separately as a giant step forward in sane, sensible eol care + decision-making – when no AD’s were created by the patient.

Technically – of course you are correct. However, I can only express my personal observations…..For someone who might be INCAPACITATED…in a totally physical sense….the scenario can play out differently.

If you can’t use your legs or hands, your vision is poor, your hearing worse, and you can’t speak…..and your various health issues are numerous, at what point does “someone” determine that you are also mentally incompetent to make a change of choice – should you NOW decide to not want that respirator that, when you were less incapacitated you may have wanted? What if you no longer want the pacemaker put in…which will only prolong the inevitable?

Thinking ahead of what could be – and being in the center of what is ….are certainly different mindsets.

If, when you are physically incapacitated….and no longer able to write or talk…how do you go about making your wishes known or changing your AD and be assured they will be respected? I am sure we are all aware that when a patient is In a coma, or deathly ill, or apparently asleep – Dr’s et al talk in earshot of the patient. Hearing may be the last sense to go…. the patient may hear every word….and perhaps the mind is intact, and there is no way to respond.

IF one is doing their best to express their wishes, but, sad to say, communication is beyond difficult – others may assume the patient cannot be rational or competent, and decisions made for them. Rather than discuss options…or wishes….an incapacitated patient – such as myself (WAS) was limited to what they had originally wrote in the AD….
Wanting everything done……to now wanting NOTHING done………….. and no way to tell anyone!

And, I would like to add an adenum….I have absolutely no issue with someone who – short of being clinically depressed and could porbably be helped – is so incapacitated that they do NOT find any value or quality to their lives – to choose to
end it. I wouold share this….I had picked a day to “end it”….I picked a Thursday. That Monday – just 3 days before my chosen final day – for whatever reason – good luck, good fortunte, G-D, coincidence, I have no idea…but, I had a 80 % spontaneous remission. All my Dr.s were shocked. I, of course was shocked as well.

Even though I had the remission – I know for a fact – that if I ever became THAT incapacitated again…I wouldn’t wait years to make the decision to end it…..I would spare myself and family the agony such incapacitation wrought.

The what-if’s are of course endless. Each individual case must be considered on its own merits. Apart from self-reference, though, this tool is a great starting point for the health care proxy. I don’t know a better tool…or even one that equals this.

You personally have much to consider, Laurie. It is a very difficult subject, also for those who have not been as personally involved as you have been. Good for thoughtful discussion.

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